Hi
My name is Allison and I am 57 years old, I recently have been made aware by my haematologist that I needed a repeat test for the jak2 mutation. I have 2 weeks to wait for there results as she advised it’s a 6 week waiting time.
My platelete levels have been risen since 2021 but until now nobody has moved forward to do this test, I am so worried about this.
For 30 years I have been living with Von Williebrands disease also Antiphosphipid syndrome which are another 2 blood disorders.
I have been reading so much on the internet but can’t find anything on anybody having these 3 disorders at the one time.
My haematologist told my while on the telephone that I am unique and interesting 
Is there anyone here that I can chat with who has these disorders?
Thank you
Hi @Allyw welcome to our forum.
I hope that there might be someone that can help you with your other 2 blood disorders…
You are now having to wait for results and the way forward to a possible diagnosis which is a horrible position to be in.
As your haematologist says you are unique and interesting and that is why they are best placed to diagnose you and discuss the way forward.
Perhaps, trust me, ‘googling’ might not always be helpful.
I think many of us relate to the feelings around waiting and not knowing, many of us do not make ‘patient patients’.
Perhaps this is your opportunity to write down all your fears, questions and practicalities for your next appointment.
Really look after yourself and perhaps do nice things to divert your mind.
Please do let us know how you get on
Hi Erica
Thank you for your reply.
I should have explained myself a bit better about the googling bit.
I was searching to find information about the 3 conditions together as the haematologist said I would be on aspirin and another medication to treat jak2, this worries me as with VWD I have never been able to take aspirin.
I guess I’m just pretty scared just now like anyone waiting for it getting a new diagnosis.
I’ve read numerous threads to find someone like me, just to try to see how they have got on.
I think I need to be patient waiting on the results, but after having breast cancer in 2007 I don’t think I’m too good at waiting.
Thanks Allison
Hi @Allyw I am not surprised, and I think it is very natural, to feel pretty scared right now.
I think my emotions have been on high alert ever since my first potentially life changing shock and very other shock just compounds it.
I think even if we haven’t got exactly the same diagnosis as you that many of us can relate to your feelings and I have found that here is a safe space to say what it is really like being me.
I have also found since diagnosis there is a lot of time waiting and not knowing.
You have been through a lot and I find that takes a toll on you and your body.
I look forward to hearing more about you and be very kind to yourself
Hi @Allyw
It sounds like your haematologist is being thorough which is good.
Waiting for results feels like a life time
While your waiting write down questions that your asking inside your own head ready for when you speak to the haematologist.
Ask them for papers or reading about the three together if there is anything
You may just be unique
Your not taking aspirin right now so jot that down as a question
I find putting thoughts on paper or my notes on phone therapeutic and I stop letting them take over.
Try and treat yourself to the enjoyable things you like eg your favourite coffee and cake, a favourite movie, buy yourself some flowers
Hi 2DB
Thank you for your reply.
I have now written down questions after your advice, probably I’ll add to them before my appointment comes through.
My appointment with the haematologist was by phone, she did say next one will be face to face where she will give me the results and some leaflets, but she said she would see me in the Autumn which to me is a lifetime away, so I’ll eat plenty chocolate before then 
Thank you, hope you are well.
Oooo chocolate I might join you
Keep listing those thoughts
It won’t be long till Autumn
Im good thank you for asking
Most definitely Erica 
the more the merrier
Hi @Allyw.
I’m just catching up on this post and can see you have already been given great advice.
It’s always so hard waiting for results and emotions can be all over the place.
Please keep us updated on how you are doing.
Nichola.
P.S can I join the chocolate party please?
I can smell them from here!
Hi Nichola
Thanks for your reply.
Got some good advice yes and really appreciate it.
Only now 2 weeks to wait, well that till the results come back.
Off course you can join us x
2DB these look delicious, my mouths watering here
Oh @2DB My chocolate muffin was absolutely lovely, thank you.